Nearly 1 in 10 Americans lives with a rare disease (BPT) - Did you know that the same number of people die each year from idiopathic pulmonary fibrosis, or IPF, as breast cancer? And yet IPF, a rare and debilitating disease that causes permanent scarring of the lungs, is still relatively unknown. Fortunately, the focus on rare diseases like IPF is growing because they’...
Igniting the conversation about rare diseases (BPT) - Each year, people across the world are invited to join together to raise awareness about rare diseases. Unlike more common conditions such as diabetes and breast cancer, many of these diseases, as well as the people affected by them, are not recognized by their own awareness initiatives throughout the year. Yet for people living with rare diseases and their loved ones, the path to a confirmed diagnosis, adapting to new treatment regimens, and facing the day-to-day challenges of thes...
Rare Disease Day 2013: Maintaining bone health in people with multiple myeloma (BPT) - In honor of the sixth annual Rare Disease Day, celebrated on Feb. 28, it is important to drive awareness about some rare cancers that are many times undiagnosed until the cancer has already spread. One particular cancer, multiple myeloma, often goes undiagnosed until the disease has spread to the bone. Multiple myeloma is a cancer of the plasma cells, a type of white blood cell found in the bone marrow. An estimated 70,000 people in the United States are currently living with multi...
Cycling to help stop diabetes (BPT) - The American Diabetes Association is challenging bicycle riders to be part of the movement to Stop Diabetes(R) by participating in the annual Tour de Cure(R), a cycling event to raise funds to help fight diabetes. Tour de Cure is a fun way to get out with your family, friends or co-workers and has routes designe...
Rare diseases: Increasing awareness for better patient outcomes (BPT) - Getting a diagnosis of any cancer can be frightening, but for those diagnosed with a rare cancer, the emotional toll can be much worse. For some of these patients, the journey to a correct diagnosis may take years, and once they receive an accurate diagnosis, it can be extremely difficult for these patients to find accurate information on their disease. One of the first things patients do is research everything they can about their illness, including connecting with someone who is al...
